So, a few nights ago I needed some serious distraction. And I wound up reorganising my Wall of WIPs. My Bubble Frock is in three clear storage boxes, the sequined fabric for the horizontal feature in its own, and I might just get a few more as they look just so much better than the lidded ones. In general one frock fits per cube, unless the trimming is OTT. Or has hoops of doom etc.

And it’s also easy to find at a glance what is in where.

I did it in part so I could figure out what I can do to get my Juelich-Kleve-Berg wardrobe sorted along with the documentation of it.

And I have to keep myself from being too excited.

So yes. More clear cubes, and I have a few exiting pages to put on my other site.

I have a number of draft posts on serious subjects that I have simply not felt fit for publishing.

One of the downsides of trying to write something serious is that I wind up spending a week on something I don’t think is ready, but it’s so very important that I keep trying.

But I have my pearlwork in the lounge, reminding me of why I undid all that work, but also a reminder of how much I need to do. My skin is so sensitive to needles that I have had to think about the project in 10cm lengths. Even that might be pushing it. But I also have more pliers that should help.

So I should take a rest and try to plan for the week.

I’m waiting on some brass findings and some faux enamel to paint them. I need to time my day in the Studio as it takes a bit of effort to get into and out of it. But I do really like my new line art for the patterns, and the next step is to illustrate the fitting process. It’s the single hardest thing to describe as it’s the opposite to how patterning/draping/fitting as was established in the 1910s, and fully embraced in the 1920s.

So that means we are several generations from a fitting practice that varied with fashion but ultimately used the same principles.

And it means often training that includes historical costume, there are modern fitting “tells.”

So I need to illustrate that and in doing so it takes my book from being grounded in the style of the original books further into the 19thC books that illustrated stitches, and trimmings, and hem facings.

So that’s starting to overwhelm me. All my projects are overwhelming. And it’s still a bit risky for me to leave the house to try and get the last of the netting I desperately need for the Frock of Doom.

Currently working on very small parts of projects.

I have had to make a break of most social media. The anger directed at disabled and/or chronically ill people like me has just been like nothing I have ever experienced. Often we can go to support communities, but the people angry at us use those spaces as well, and specifically to share their anger, not to learn.

And of course anyone who isn’t exposed to that finds it really hard to understand how very traumatic it is, even people “just asking” or positing thought experiments on how disability is a burden to others.

If burden is a word you are primed to hear/read because it means you, it adds up.

Many of us live utterly afraid of losing personal connections by being remembered of as part of that burdensome community. That every kindness, or help, or support will be tainted and a backload of resentment will spill out. Because it does happen.

Often we can reach a point in when we feel that compassion is running out, based on past experiences, and it’s only a matter of a few wrong words before it happens again.

So why is this year making that ever so tense?

An entire year being told in every way imaginable (and to most people unimaginable) that me and people like me should just hurry up and die so everyone else can get back to normal. There has simply been no response that hasn’t either directly lead to people like me dying, or rejected by the public because it didn’t.

The effort it takes to keep believing I’m worth saving, that my life has value, that I deserve every chance to stay alive is exacts so much of a toll.

People often tell me they can’t imagine living like I do, and that is not a compliment. It hurts.

I’ve had (refractive: resistant) Rheumatoid Disease for more than 19 years now. It took 12 years (coming up to that anniversary too) of “step therapy” (fail first) to be able to get access to Rituximab- the first monoclonal antibody approved.

Most therapy is self administered. Be it a daily or weekly pill, or even a weekly or fortnightly injection (thank goodness for auto injectors, I mean.. with so much bone loss in my hands….) And then therapy to support that long term use.

But mAbs have to be administered by a specially trained medical team. My scripts show ~$NZ1000/w for all the biologics I’ve had access to. Which is you know, a lot. So we tend to do day stay with as many other patients as can safely be in one room. Haem ward usually.

You get a loading dose of antihistamines, paracetamol, and steroids. You get a saline flush at the end. Blood pressure tends to drop quite alarmingly, so I do what I normally never do and have tea with sugar, and/or I pack a supplementary drink.

One of the things about tricking the immune system? It can learn, and it can wind up recognising the foreign biological material for what it is. So I am on Leflunomide to slow down my immune system. Auto-immune disorders do not indicate a “weak” immune system, they are quite the opposite.

All of which is to say, this is complicated. But it is worth it. Cure? No. Quality of life? Fewer side effects? Yes.

If I really believed current interest would make the therapy cheaper and and easier to get I would be celebrating. I know for a fact I would not have had the damage I have if I had early access. So myself, and people a generation before me? We want better for newly diagnosed people, we do not want people to go through what we have. We want that early access, we want people to have their very best chance.

But this pandemic has caused global shortages. Not always directly (Plaquenil) but also due to reduced air freight, redirection of manufacture…

I will be getting my infusion this week, and then 14 days later. I really need them, and am feeling very grateful and lucky to not be moved to a biosimilar (my poor track record means this is probably my absolute best chance.) I’m also currently in a spiral of RA and Fibro- the RA means I have maybe an hour or two every day or two in which I can tidy, or organise, and maybe once or twice a fortnight I can iron and pin fabric.

The infusions do not fix me. But they give me much needed hope, and a little wiggle room to not spend so many hours a day in bed.

It’s also looking more and more like fibro has an immunological cause. Having spent a few years in the fibro zone, and nearly two decades of clear cut auto immune stuff? This is not a comfort. I do hold hope that it means my infusions have a double effect, I really hope so. But it was slightly easier to deal with as an end result of over stimulation of pain receptors.

My infusions are booked for this month 🙂 I am very lucky to still be able to get Rituximab. I have had luck with generic chemDMARDs but I am very nervous about bio-similar biologic DMARDs. I had bad responses to Humira and Enbrel so it’s a concern based on experience.

But I am and I’m prepping myself. Mix of relief and nerves.

I managed to press my velvet guards for my red and black Cleves gown yesterday to try and work out how much I need to cut for the narrower border. I definitely need to overdye velveteen to match. It’s not easy, that crimson red simply is not available. It is a vibrant cherry red in bright daylight, a crimson under incandessant. So I may have to just overdye my existing fabric to match.

Crimson would be very appropriate and I have some really nice dye. I just need the courage. I have not had much luck for the last few years with my costumes, so it really is at the point where I’m a bit scared to try anything.

I have been stalling making the corsets I need to work on projects as my hands and body are just not okay. And my hands really don’t like coutil. Pinning or trying to get a hand needle through for basting? My neuropathy and fibro combine in unexpected ways- I can’t get enough of a grip on the needle, but then being stuck by a pin is excessively painful.

It was probably the biggest warning that fibro was on the way. It started several years ago and I tellingly dismissed it as “hyper sensitivity.” So.. yeah.

But I realised that my Elsa Ice Gown has a fully supportive inner bodice. It needs it due to the weight of the rhinestones.

But it’s comfortable. Very very very comfortable. It’s two layers of stretch charmeuse cut high in the back, with padding for shape, and I happen to have the exact same fabric in a different colour already cut to shape.

So I could if I wanted make a corselet just so I can start trying on my projects.

Oh, I also realised I can probably also use some chunky open ended zips for my corsets after all. So I’m feeling a lot better about the prospect of working on my stays again 🙂 Some need lacing holes though. I really should go on an eyelet and rivet hunt. I keep stashing them where I shouldn’t.

These first two are Broadway examples, the third I have listed as for Ever After, all are about support and ventilation while reducing weight and bulk of fabric.

Anyway. I have a bit more of a plan now. I really want to finally finish my fluffy 1878 gown a la Tissot, so I really need to get some fit going on while also figuring out that excessively plunging back neckline- the sheer layer will help support but it is very low.

But I’m also taking inspiration from plates so I should also get all that sorted as well.

For those wondering do I really mean research or am I web surfing… yes researching. I’m trying to find evidence of any sort to suggest whether a veritable treasure trove of images can be trusted, or not. I’m not looking for evidence to support me, I’m looking for any evidence. At all. I want to just get the context.

One of the problems is that I have tried all the variations I can to find any mention of a specific manuscript. There is a fabulous paper, open access, but I can’t check their references. And I really need those references as it might help me brute search even more terms.

My collection of NRW images is pretty extensive. The only black holes are, weirdly, in printed images. Cologne was printing so much you would think it would be easy. But I have very few files of prints I can say for sure are from Cologne.

This source is amazing. Really amazing. I might have managed to find one figure that is 100% based on an in situ stained glass window. And as a portrait.

I’m trying to find sketches and anything related to an artist who has been suggested as having a hand in this document. And it’s very difficult. Until I can find a specific set of preparatory images I’m left with my own collection of thousands of images. And as the bulk of my evidence in support of the images being accurate is of allegorical or non-region specific styles?

I need to find a stash of sketches asap or somehow luck into new digitisation of paintings so far not recorded. I deep dive bildindex so often that I don’t think there are images I’ve missed.